“What on earth is the rationale there?” : Prohibition on sharing test results with patients online in California

The question asked in the title of this post is one I have as well, so I’ve decided to ask it in this post.

It was posed by e-Patient Dave in a comment on this post illustrating the challenge of test result sharing with patients today.

He’s referring to California Health and Safety Code Section 123148 , which makes it illegal to share certain kinds of test results with patients online. It also says:

In the event that a health care professional arranges for the provision of test results by Internet posting or other electronic manner, the results shall be delivered to a patient in a reasonable time period, but only after the results have been reviewed by the health care professional.

Knowing what we know about health care, reasonable time period and “only after the results have been reviewed” may be in conflict.

I understand this law was passed in 2002, so in 2009, I’d like to ask patients and those who care for them what they know of the rationale here? If you do not live in California, is there any such legislation in your state? If this law no longer existed, can people envision what the harms (and benefits) would be?

9 Replies to ““What on earth is the rationale there?” : Prohibition on sharing test results with patients online in California”

  1. I think every organization that goes through the transition of sending results directly to patients electronically has some version of this discussion. To a certain type of physician personality this feels like a jump into the unknown and so the resistance is expressed as a control issue. The rationale I've had explained to me (sometimes shouted at me) is that one of the doctor's jobs is to interpret results to patients because sometimes they will freak out if they see something in the results they don't understand, the implication being that the patient might then suffer in a way for which the doctor would then be responsible. This argument makes little sense to me for all the reasons you've articulated so often and so well, but I can imagine a group of physicians making a pitch like this to a legislature at a key moment in crafting a law and the the result being what California is now left with.

  2. Sharing test results with patients in Oregon, Washington, and Alaska is complex and we recently reviewed the laws. Here's what we found:

    Oregon: A clinical lab may release results to a patient no sooner than seven days after receiving a patient's request–unless the provider authorizes the release to the patient prior to the seven day waiting period.

    Washington: Lab results may only be released to "authorized persons or designees" defined as "any individual allowed by Washington state law or rule to order tests or receive test results." Authorized persons are generally considered to mean providers who ordered the tests; however it could also mean patients, especially if patients are able to order their own tests. Because this term is not clearly defined, the Department of Health recommends first releasing the results to the provider and then five days later releasing to the patient.

    At least one large WA organization does release all "normal" nonsensitive lab results to patients through their patient portal. Abnormal results go to the provider first and then a day later access is provided to the patient subject to the following: Ambiguous results subject to provider interpretation are not released without provider authorization and "sensitive" lab results e.g., HIV, STDs, radiology, and certain pathology results such as infections are not released without provider authorization."

    Washington state law is pretty open. The state agency that we contacted recommended that we hold results for five days, but this wasn't actually required.

    Alaska: Laws and regulations are silent on the matter of who is authorized to receive results.

    My opinion is that a national policy is needed and these results should belong to the patient and made available to them as quickly as possible.

  3. I believe the California legislature subscribed to the idea that a physician's interpretation is needed for a patient to truly understand the result, and that it is grossly inappropriate and harmful for a patient to get bad news without the interpretation and support of the physician.

    There is no such law in Colorado, and at Kaiser Permanente we automatically release most results 2 days after they are resulted, even if the physician has not commented on them. We do not differentiate normals from abnormals. As you point out, in a busy adult primary care practice, it is often difficult for physicians to be able to get to the labs within 2 days, but we know our patients expect them. This approach has been well received by our patients.

    For sensitive labs (those that deliver potentially grave or fatal news, such as initial HIV results, genetic testing, etc), we found that providers often forgot to release the labs after speaking with the patient, and patients were dissatisifed because they could not see the results they already knew. So we now automatically release those after 7 days, with the idea that that should always be sufficient time for the provider to have reached the patient to discuss the results.

    So the harms if California were to rescind this law? There would be times when a patient sees bad news before they have spoken to the doctor. When it happens it is upsetting to both patient and provider. But I think the benefits outweigh the harms–the patient gets the information sooner than they might otherwise get it, and so while they may be upset they also can contact the doctor to get moving on decision making and treatment. They may get to treatment faster in some cases.

    There are also times when a mistake is made and a provider misses that a lab was abnormal. If the information is available to the patient online, they can catch an abormal result even in the rare case where no one else did. Ultimately, giving patients access to all their results online results in better health care.

  4. Mark, Jeff, Kathleen,

    These are great comments – Jeff, so eloquently stated about where this appropriately came from, Kathleen, a good canvas of what's out there, and Mark what you(we) have learned with 6 years of experience.

    This seems to me to answer the question about harms from repeal as "not much, and maybe more harm" from not repealing, because we may keep the most important person, the patient, from participating in their care where it matters most. In other words, that patients would be better protected to not have this protection,

    Ted

  5. I would also like to add that I think one motivation for the passage of this law was to protect patients from the possibility that online data might not be as secure as data received in the mail or in person, and that sensitive lab results might be available online and used for discriminatory purposes. I think that we have seen a lot of progress on privacy protections in the intervening time, and the justification based on protecting the members data from unauthorized access may not be appropriate any more.

  6. Medical records online would be a very useful tool to have. Especially for people with chronic disease that have a much bigger need for a big data base that holds every record in one spot. You should have a choice as to what records are put on the internet.

  7. It is probably unconstitutional and absolutely immoral to prevetn patients 100% access to ALL records at the moment they are available to anyone else.

    But in the meantime there are many national labs in the US where a patient can get tested without any doctors participation and get results online. The business area is called confidential medicine and it is a huge moneymaker. I am starting several new businesses in this area – so while politically I think this form of nanny state is horrible – its great for business. (BTW: My grandfather was a bootlegger – guess bootleg medical tests are the new thing)

  8. Lars,

    Interesting analogy and concept – "information bootlegging"

    Just as a great health care system should say it succeeds when it is put out of business, maybe an open health care system will put information bootlegging out of business, too. In the meantime, as your work shows, for every action, there's a reaction, and there will be people available to meet the need if traditional health care cannot. Thanks for commenting,

    Ted

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